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Saturday, April 30, 2011

I always figured that if I didn't post for several days in a row, it was because I felt great or that I was so busy that I couldn't be bothered by the pain. Not so much. I've been meaning to come in and post a bit, tell everyone how this day feels or that day. But each time I tried to start, I'd either get distracted into another task or I simply didn't care. I just couldn't muster the energy to type it all up and bitch about it.

Well, I'm here now to tell you that Springtime and Humidity have teamed up to create a tag-team of hell. The ever-changing weather of the Spring isn't bad enough, we had mid-80s one day only to drop to the mid-40s the next. We had a heat index one day and a wind chill the next. And the next goddamn person who says: "If'n you hate the weather in [state name], just wait five minutes! HAR HAR HAR HAR!!" is going to get roundhouse kicked in the back of the face. By me. By me, standing on a chair. By me, standing on a chair, holding onto the wall for support. By me, standing on a chair, holding onto the wall for support, and two hours after I've taken my pain meds. THEN you'll be in trouble. Whoo-boy.

So yeah, we've got the ever-changing weather patterns. Rain, sun, hot, cold... the barometric pressure is up, then down, rising, then falling. And let's barf up some humidity on top of it. Any level of humidity- I can feel it. Why am I talking in reverse? I don't know. I blame the weather though. Or... maybe Yoda had fibromyalgia and that's just how it makes us talk. Who the hell knows? I mean, fibro is different for everyone, yet same enough to have a list of common symptoms.

Yeah, here's your common symptom: PAIN.

Two weeks from today is the Janesville Renaissance Faire. I was hoping to have had a significant weight loss before then. To feel better before then. Granted, I do feel better than I did last year, but only marginally and only on good days. I wanted to be able to run and play with the rest of the kids. You see, I dress up and walk the walk. I have trouble talking the talk, but I still have fun. Don't judge me, you've not seen the boobshelf in a lace-up bodice.

With all this weather fluctuation, I'm worried that I won't feel good enough to enjoy Bristol Renaissance Faire. And I desperately want to. I want to walk the walk and talk the talk and entertain myself and other people and have fun and spread joy and watch the joust (ooh, baby, the joust) and see the acrobats and STAY ALL DAY so I can see every show and... what's that? I sound like I'm whining? Well, dammit, I AM! This goddamn disease has taken enough from me. It is part of the reason I have a cyborg knee. This disease took too many years from me. For three years, I didn't even go to Bristol because I knew I wouldn't last. It was too hot, or too humid or too... whatever. And I went ONE time in 2009. In 2010, I went three... four? And it was fantastic. And I want to make the whole summer fantastic.

The disabled guy has his NASCAR. That's at least two days a week (more if he watches the practices and qualifying). Haven't I suffered enough NASCAR exposure to earn this? Two days a week with like-minded people who all appreciate each other's laced-up boobshelves and uh... other parts?

You're thinking to yourself right now: "Damn straight! You have earned that right! And, I didn't know NASCAR exposure was a disease!"

Well, it is. And it hurts slightly less than fibromyalgia.

Slightly.

**No offense to any NASCAR fans out there. I'm not a NASCAR-ist. I'm married to one of you!

Tuesday, April 19, 2011

Here it is, after 11 PM. And I'm awake. Yup. Except this time, it isn't the itching... This time, it's the pain. Most of the time when I complain of "pain med fail", it's because my skin is itching too much for me to sleep. But today, I just fucking ache. I woke up achy and I stayed achy. I even fell asleep this morning around 7 AM (I get up at 5 AM usually). I slept for almost two hours and then could barely move to get up. I dragged myself to the shower. I stopped though, at my bedroom door and just stood there for a moment. The disabled guy actually asked if I was okay. I just said, "No." and walked on to the bathroom.

I'm getting better at tolerating a hot shower. Sometimes, my skin hurts and even the shower hurts. But on these harsh-gravity days, I can tolerate a near-blistering hot shower. It seems to help. Heating pads don't hurt, mostly because I can't wrap my entire body in one. And my soft-and-fuzzy-blanket isn't always an option because sometimes I hurt and I'm warm. There's no winning sometimes.

I still haven't gotten my new dosage of Gabapentin in the mail yet. If I don't get it tomorrow (two weeks after my appointment), I'm going to call to find out when it was sent. I'm also waiting for a parcel from Shawn in Australia. That'll have some Cadbury in it and Australian Cadbury has healing powers. It does. You can't tell me it doesn't because odds are, you have never had it. AND odds are if you have, you weren't in need of healing. So you don't know for sure. So, trust me. It does.

As I'm sitting here, typing this, all my muscles ache. I feel like I need to stretch, but stretching hurts more. Oh, speaking of stretching, I have been doing some yoga stuff. Not a full yoga routine or anything, but some basic yoga-style stretching. It's a start.

I feel bad when I complain about all this. I've been doing a 365days self-portrait project for over a year now and these days when I feel like absolute hell, I fake my way through my portrait. Before, I'd do a photo of my feet or my hand or something equally lame. But, I figure if I can tack on a happy face, I can fake my way through my self-portrait. My profile photo here on the Blogspot is a bad day photo. In fact, I'm pretty sure it was one of those "up all night, bad next day" photos. But, hey, I faked my way through it.

And what makes me feel bad about it is that some very nice people tell me how lovely I look and then say how great I'm handling it. And I don't feel like I am. I feel like I'm a sniveling little crybaby about it. Doing a 365days self-portrait project is fairly self-centered thing to do anyway, but then to complain about how shitty one feels as the photo's caption, well, it seems like overkill. I don't mean to and I try not to, but it happens. I try to keep it contained, for the most part, to here... where the title tells you what's going on.

Here's hoping tomorrow's self-portrait submission will look as good as how bad I feel tonight.

Wednesday, April 6, 2011

Good news, the pain in my hip/thigh isn't anything serious. Just bursitis. What's that? Inflammation of the bursae. You know how you take care of inflammation? With anti-inflammatory medicine. That I can't take. Because when I take it on the long-term (meaning more than twice in a row), it causes me to swell up. That's right, something that's supposed to take away the swelling causes me to swell.

So, for the fibro, we're going to increase the Gabapentin dosage. A little at a time. An additional 100 mgs at bedtime for a week. And if that helps, then I can do the same with the daytime dosages (just like last time, no faster than once a week). This is the reason she gave me this particular drug, because we can up and down the dose by a wide margin before we can call it a failure.

Speaking of the good doctor, my next visit with her- in three months- will be my last, with her. She's graduating and moving on. Yeah. And I like her. At least now I know if I get stuck with another lousy doctor, I can demand another. No more two-year limbo till someone helps me.

On this visit, we also addressed the humidity issue in that the humidity levels are a key factor in fibro patients' lives. The disabled guy doesn't believe me when I say I can tell when the humidity is high. I even said, "Trust me, it's at least 75%..." and he checked, it was 80%... He claims it was because I looked online. I can't convince him that the real reason is because I can feel it in my muscles, in my skin. When I feel exhausted and weak, as if I'm being pulled to the ground slowly... that's from the humidity.

As I sit here and type this, the sun is going down. And it looks like it will be a brilliant sunset. The only problem is that I'm an hour into my pain meds and I'm listening to Shake Hands with Danger Radio online... so even if I wasn't drugged to the gills and could drive out and take photos, I wouldn't take these headphones off. And the cord isn't that long. I only mentioned it because the sun is starting to blind me from the left side because someone opened the blinds on the door.

But I digress...

No, I don't, actually. I'm done for now. Back to the frustrating project of trying to create decent business cards. I've actually created them already. I can't get them tweaked just so and aligned properly.

Tuesday, April 5, 2011

I have been complaining a lot lately. If you read the two previous posts, you know this. For almost three straight days, I hurt so bad I could barely walk. The pain was so intense that I fought tears. And then I woke up on what would have been the start of the fourth day... and was nearly fine. (I found out later in the day that the pain that felt like my muscle was shearing away from my bone sort of lingered a bit, but was more like an afterthought).

I woke up today and I had my usual achiness and now, hours later, I'm having pain in my hip (where one of my "hot spots" is located) and the tendinitis in my shoulder has flared up. I had to get showered and dressed at the same time the kids do for school, so we rotated our shower times and I was waiting for one of them to finish their shower so I could brush my teeth. And I got tired standing there, so I sat down on my bed. I winced because my hip hurt. I raised my arm to rest it on the pile of pillows that I elevate my legs on at night and I winced again because my shoulder hurt. And that was when the perspective came to mind.

There are so many other things that I could have. Finding out you have fibromyalgia is a process of elimination. They don't just stamp you with "fibro" and send you along. To get there, you have to have a slew of tests to rule out a bunch of other stuff. Blood tests and scans and other scans that require you to drink stuff that claims it has a "pleasant mint taste" but it lies. Yeah, I had to drink two of those and the scan itself took less than ninety seconds. They ruled everything else out and then I was stalled for two years- but that's not the point. The point is, they rule out everything else before they finally say it's fibromyalgia.

I'm lucky. I'm damn lucky. I only have fibromyalgia. I have days where I'm in pain and I'm exhausted. But there is treatment to help. I can take Vicodin for my pain and while it doesn't kill the pain, it takes the edge off and makes it tolerable. To me, I can (and have for years) function at my pain level being at a 5 on the 1 to 10 pain scale. Around 7 I start to lose focus and of course, 8 to 10, I'm a whiny fool who can only post blogs where I bitch a lot.

I could have ended up with MS or lupus. I could have had severe nerve damage. There are other factors that could have caused this pain that would have ended with me in a wheel chair. But I don't have those things. I have fibromyalgia. And I'll have it for the rest of my life, but I'm lucky in that I'm under treatment. (I have an appointment tomorrow, in fact).

I sit here with my aching hip and shoulder and the randomly itchy skin (which wasn't bothering me when I started typing, but now I'm itching). But I could be confined to my bed. I could be in a wheelchair. I could be stuck with that goddamn cane. But I'm not.

I have pain. And that sucks. But it could be worse.

But it's not.

So, when you're bitching that you stubbed your toe or you strained your shoulder playing tennis or even aggravated your carpal tunnel by playing Black Ops, remember there are people like me who have it worse. And I'll remember that there are people out there who have it worse than me.

Monday, April 4, 2011

For all the pain I was in, for all that agony, nearly in tears... it's gone.

I was awakened two hours early today and I was fully expecting to feel as miserable as I have the last few days. But I sat up fine. I walked to the bathroom fine (well, not fine, my feet still hurt but that isn't entirely due to fibro). I came downstairs and took the dogs out and that's when I realized my thigh didn't hurt.

I walked from one end of the deck to the other. No agonizing pain. No almost-tears. No clutching the things around me to help me walk. (I was this-close to picking up my cane again).

The only explanation I have is that a huge storm rolled through last night (overnight, whichever you prefer). Thunder, lightning, tornado warnings. I was even awakened by it around 130 AM. But this huge storm rolled through and when I dragged myself to bed last night, I was battling the tears as I made my way up the stairs.

And now.

Gone.

Now I'm just tired. I'm not in pain. I still have some itchy skin, but I don't feel like I need to scrape my skin off to get over it.

So now my new superpower is The Human Barometer. I'm absolutely of no use during weather changes except to alert you to the fact that the weather is changing. You have to listen carefully to the tone in my whining and the intensity of the sound. And of course, the frequency at which I whine. And I mean time-wise, not technical-sound-wise.

Sunday, April 3, 2011

Yeah, that's how I'm typing this. I swear to whatever is up there on that cloud in the sky with the remote control (or in the middle of the Earth, flipping switches... OR that big black nothingness... I don't want to leave anyone out) this is getting old. I'm still quite happy that we know I have fibromyalgia, because having that diagnosis is a good thing. That means they can help. Right? RIGHT!?

More bad days than good are happening now. And- I've said this before- I'm not sure if it is a medication failure or if it's just that fucking Spring has sprung and is spewing that special kind of hate all over me. Oh, you have allergies and the pollen makes your eyes swell shut? They have shots for that, goddammit! I take a single pill a day, one a day and I'm fucking fine with my allergies. I'm allergic to cats and dogs, guess what, I own fucking cats and dogs!

Okay, that's not true. My dogs and cats don't fuck each other. Well, sort of. Jasper is a stud dog, but you get what I'm trying to say.

And I don't mean to play down anyone with allergies. I understand what a pain in the ass it is to deal with, especially when you have to, you know, leave the house or breathe. I hear breathing is good. Like I said, I have allergies too.

But here I am, the all-over pain seems to have subsided ever so slightly. But if I bump into something, even slightly or if one of the dogs puts their pointy-pointy paws on me, it fucking hurts. And this fucking pain in my thigh, I'm 'bout ready to smack a bitch. I'm dragging one leg around like I'm fucking Quasimodo and when I reach the stairs, I groan like... well, Quasimodo. Never mind getting my fat ass up the fucking stairs. That's always fun. NOT!! [Patty, the 90s called and they said stop using their stupidity] CALLED MYSELF OUT THERE!

Itching. Itching. ITCHING! THE ITCHING!! IT-CHING!! DID YOU HEAR ME?! THE FUCKING ITCHING! I'm about ready to claw my skin off. But not everywhere, thank fuck. Just off my arms. The rest of my body isn't itching. Just my arms. Great. I use my goddamn arms. A lot. For things. WHAT KINDS OF THINGS ARE NOT YOUR BUSINESS!

And the tired. So much tired. But I cannot nap (not now, it's five-fucking-PM). If I had tried to nap, one of two things would have happened: My nap would have evolved into a restless and fitful extended sleep session and I would be up all night. OR I would have set an alarm to wake me up within an hour or hour and a half and I would have felt worse than when I went to sleep. So yeah... no fucking nap.

There was much discussion about dinner tonight. Barbecue ribs. We're either havin' 'em or we're not, goddammit. On the grill? In the slow-cooker? Fuck you, they're in the slow-cooker. They've been in the slow-cooker since 630 AM. And guess what we're having with those now-super-tender ribs... TOO LATE! We're having mashed potatoes, some kind of vegetable and biscuits.

BUT...

I'm sitting here, typing this fucking thing. And the disabled guy is in the kitchen, finishing up dinner. I say "finishing up" because I'm the one who did all the rib-work this morning. He got up after his NASCAR race and said, "I better go start dinner."

I said, "Start? Don't you mean "finish"?"

Yeah... finish.

Plus, for some reason, today was the day for "everyone needs a hair thing done"... Disabled Guy had a haircut... the boy had a haircut... the girl needed her hair dyed. (the last one I offered, because fuck it, I was already standing).

But, things aren't all bad- Vicodin time is in an hour, and since I didn't take any at all today (daytime), I can take my maximum dose. And I have a fuzzy Chihuahua laying on my feet. AND, the Disabled Guy is cooking dinner.

And this pain in my fucking thigh can fuck off now. Anytime.

A note to end on, every fucking time I typed "thigh", I typed "thing" first and had to retype it. And with that, I leave you to it. Fuckity-fuck-fuck-fuck! FUCK!

Saturday, April 2, 2011

Last week, my daughter went to New York City. The trip was paid for by selling some birdhouses (made by the Disabled Guy) and some photo prints that I did. And, in a last-ditch effort to come up with the money, I posted on my Facebook page that I was gladly taking donations. I had a few friends who had offered to send me a donation for Ceej, but at the start, I didn't want donations. We wanted to do it ourselves. By the end, I was desperate. And I didn't expect the amazing outpouring of generosity. Not only did a I get some donations, we got some sales and several people reposted the link to the shop (where we got said sales).

Why am I telling you this? Well, because last Saturday, I had a long night and didn't get to sleep till 5 AM. And Sunday evening, just as I was about to die from exhaustion, Ceej texted me to tell me that they'd be home "in about four hours..." which put it at 2 AM. I decided to sleep on the sofa, so I wouldn't have to stumble around in the dark upstairs when the time came to pick her up. I ended up just dozing on and off for about an hour and a half. I did discover what the dogs were barking at all night those other nights. They're growling, then barking, at the changes in the Disabled Guy's snoring. Now we don't need advice on what to do and no, he doesn't have sleep apnea. He doesn't have it. He's been tested and the problem is related to his stroke. The flappy thing in the back of his throat (well, we all have it) is paralyzed on the right side (like his arm and leg, lip, eyelid, you get it). That's why he snores SO loud and in any position he's in.

But I digress... With Ceej's excitement, I was up till almost 6 AM. But I didn't just dally around. I uploaded every single photo related to her trip. She only took 347 photos. We whittled them down to about 340. ~Linky-link~

Thursday was the big grocery shopping day. Bad enough because I've been trying to recover from those two nights where I was up till after 5 AM. And Friday- the usual payday errands. By the time we got home (around 2 PM), I was so tired and sore, all I wanted to do was sit in this chair. But Jase asked if I'd go with him to the next town. Since I had to look for something in a store there, I figured why not. He was driving, I just had to sit there. But his car is small (I drive a four-door truck and he drives a Cavalier).

Last night, the pain meds didn't touch the pain. The Gabapentin, well, it didn't do what it was supposed to do either. I was up till exhaustion took over at 2 AM. I crashed into my pillow hard. And I've been so exhausted all day I can barely stand. I've been avoiding a nap because I want to sleep tonight.

On top of the tiredness, my body aches. All over. My muscles are sore, like that "I was thrown from a horse" feeling. Then apparently, I was trampled by the horses behind me. My neck, shoulders, back, arms, legs- all stiff. I have a deep bone ache across my hips and lower back. It feels like arthritis (I know what that feels like). I know it isn't arthritis, but that's the sharp, stabbing pain I have. And the muscle down the front of my left thigh- that's screaming in pain. As long as I sit still and don't move my lower body at all, it doesn't hurt. But at the first sign of movement- even to adjust my feet under the desk- the symphony of agony flares up.

I can barely walk. The first several steps, I have to hold onto things (if I give in, I'll use my cane, but I don't want to use my fucking cane!). Going upstairs is such a chore and it hurts so much. My skin is itchy and it feels hot. Hot from the inside. Apparently, those thousands of tiny, hairy-legged spiders have picked up torches. I want to stretch, just languidly sprawl out and stretch every muscle. But I can't. When I try, I feel like my muscles are being ground together like a mortar and a pestle. And this isn't all my own fault. We had massive weather changes this week. Such as? We got snow yesterday. Yeah, that's a hell of a change.

I feel like hell. And of course, nobody in the house cares. My online people care. (they say they do, but if they don't, I don't care- the fact they said they do is enough at this point). If I could just curl up in a ball under my soft and fuzzy blanket, I would. I didn't even want to do my photo of the day, but I did. My original plan didn't work, but I still managed a decent photo.

So I have bags under my eyes to accentuate the dark circles and I want to claw my skin off my body. But my hair looks nice and that's all that counts, right?